Do I really have IC?

[stylnmom]

Never had a problem with my bladder. No family history of bladder or pelvic issues

1996 - During sex I felt a “jolt” in my bladder area. Next week or so in severe pain, constantly had to pee and burning sensation both pelvic and rectal area.
Went to doctors, no infections or diseases. Urologist did a Cystoscopy with Hydrodistention and diagnosed me with IC. Few weeks later during intercourse I felt a sharp stabbing pain on the left side of my stomach, because of it, I could barely walk. So now I had both left Stomach pain and IC pain.

slowly the burning sensation went away, frequency came back to normal, and never woke up in the middle of the night to go to the bathroom. I didn’t know much about IC at this time. Being in college I ate and drank whatever I wanted. I never took any meds for IC.

2002 November – My GYN performed a Laparoscopy surgery to see if I had endometriosis. Found my colon was positioned wrong way, which he straightened, cut a few adhesions off, and cut the utero-saceral ligament off. My left stomach pain greatly improved and bladder felt normal with absolutely no IC symptoms at all.

Felt normal and I thought I was cured; I got pregnant and had two kids and never thought of my bladder once in six years.

2009 – During sex I felt the same “jolt” in my bladder area. Had to go and sit on the toilet immediately. IC symptoms came back. I was in lots of pain with burning sensation all over and waking up frequently at night.

I Went back to my GYN and asked for a Laparoscopy. He removed a scar on my uterus and cut some adhesions off. After surgery I felt much better. Now I have no burning sensation. The urge to go to the bathroom is there, but its mild and I can ignore it for hours. I never get up in the middle of the night to go to the bathroom.

I feel much better as I get closer to my period and during my period the symptons are gone. I think my symptoms get worse when I’m ovulating. I look forward to my period, because I feel normal during that time. Birth control pills made it worse so I got off them. I eat whatever I want, only I gave up Sodas. I still occasionally have wine and mixed drinks, but I mostly drink beer when I go out now.

I’m scared to take meds and haven’t taken any ever. Weird but I’m less sacred of surgery. I want my GYN to perform another Laparoscopy surgery since every time he does, I feel better and once it went away for 6 years. Of course he has no idea why the surgeries are helping me.


I’m frustrated with my urologist because he says my case is abnormal, but he still feels its IC. I mean the few Patterns that IC patients have I don’t seem to fit those. He also has no Idea why the surgeries are helping me, and he just wants to ignore that part and put me on meds.

I don’t even know if I have IC. I mean does it disappear for 6 years? I thought the symptoms are supposed to get worse when you have your period? Birth control made it worse for me.

I just want to know whats going on with me. I would like to know people’s opinion. Any comments, suggestions, help, or advice would be greatly appreciated.

Thankyou
stylnmom:smile tee

[SharonA]

:welcome: to the IC Network...:)

I really don't know if everything you are describing are symptoms of IC. It could also be gyn problems since the surgeries do help, or a combination of both IC and gyn. What confuses me is the fact that a Uro did the Cysto/Hydro 13 years ago and found evidence of IC.

It is very possible that the symptoms of IC have calmed down to the extent that you do not experience a lot of the usual discomfort/pain. It is not unusual for symptoms to "go away" for extended periods of time only to come back; then disappear again.

Not everyone has problems because of their periods. It is so individual. Some do, some don't. Even the "patterns" you speak about are very individual. It can be very frustrating. *sigh*

If you are concerned enough, it might be helpful to ask the Uro if you need another Cysto/Hydro. That way, the doctor can get a good look inside to see if the bladder walls look the same as they did during the 1st one. It could also show if anything else has occurred that may cause some of your symptoms.

I hope you are able to get some answers, soon. The not knowing part is, to me, the most frustrating time.

:):):)

[VickiB]

I'm guessing too that you may have more going on than can be blamed on IC alone. It is possible for IC to have highs & lows like a roller coaster ride. Over the past 30 some years I've had years that were awful and some were exceptionally quiet. Never for as long as 6 years like you mentioned, but I've had a few 14-16 month stretches where I thought maybe I was cured.

As to any patterns, I think sometimes docs like to pigeon hole a bit hard. (I've read some people say their doctor said it can't be IC because they are able to sleep through the night) While many say their IC is at it's worse when their period comes around, there are also many like me who tend to flare during ovulation. I looked forward to my period because my symptoms would fade then.


I’m frustrated with my urologist because he says my case is abnormal, but he still feels its IC. I mean the few Patterns that IC patients have I don’t seem to fit those. He also has no Idea why the surgeries are helping me, and he just wants to ignore that part and put me on meds.

I don’t even know if I have IC.
Perhaps a second opinion might help? It never hurts and it might bring you some peace of mind as to whether an IC diagnosis is correct for you.

Hang in there!
Vicki

[stylnmom]

Thank you for the replies. I've been a little down recently. I was so happy during those six years and now to deal with it again is very fustrating. Most of my family doesn't really understands what I'm going through. Lot of times I feel irriated with myself. Anyways, I thought no one would respond to my post. Seeing your replies really cheered me up. Thank you

stylnmom:smile tee

[Mothergoose]

I agree with the person who suggest you get another hydro/cysto to see what is going on, but also and I am sure you have read this buy now but try the diet, I find when I am good I can eat almost anything I want, but in truth there is many things on the IC diet I don't like anyways and another lot that I am allergic too, but when I am good I find I can eat items i can not even look at when things are bad. The diet is a little tricky that way sometimes you can eat an item and other times you can't, sometimes you can get away with a little of something other times you can't. But the big thing is it won't hurt you to try it, and it won't make things worse for you.

good luck MG

[stylnmom]

When I got the hydro/cysto I was 19 and I didn't tell my parents I was going in for the procedure. Anyways the doctor wasn't really nice to me and never explained what she saw during the procedure. 7 years later when my GYN asked for the records, her office never sent them no matter how many times the request was sent in. so I don't really trust her IC diagnosis.

Anyways, I'm too scared to get another Hydro/cysto casue i was in pain from it for almost a month. However, if my symptoms get unbearable, i will definitely consider going in for one.

thank you
stylnmom

[Mothergoose]

Sounds like you just had a dud of a dr. you should give it a try again, but with a more understanding dr.

MG

[Lindsay K.]

I was young also with my first cystoscopy with hydro/dist in 2000, age 20. My IC goes in periods where my bladder is very sensitive and tender with frequency/urgency and this can last days to months to years and then I come out of it and I could be relatively symptom free off meds and can eat anything. I was in remission for several years and thought I might even be cured but it hit me again 2 weeks ago and I start back over again in the healing process. Immediately got back on the diet and my meds after I accepted that this wasn't just a UTI after antibiotic # 2 wasn't helping. Diet and meds have made a difference already and the pain is starting to ease up although not quite yet my normal self. IC is very frustrating but there are treatments available to help get symptoms under control. I also encourage you to consider another cystoscopy to find out if it is IC so that you can start treating it if needed. You may want to visit this Drs office yourself and request a copy in person. It is your right to obtain a copy of your medical records--I work in the medical field. I hope you are feeling much better soon :)